Last night's trip to the mall was an embarrassment. Even Dad had a hard time with B. My oldest wanted to go to a few shops with her Christmas money. So we made it a (supposed to be) nice family outing. Dinner at Golden Corral and then the River Ridge Mall.
Even the restaurant thing kinda went downhill. But the mall trip was worse.
At the restaurant, he would barely sit in his seat, was boisterous and loud. He while in a happy mood at the time (which I AM thankful for) notably bothered certain surrounding customers with his "antics". It was almost like the viewing of things to come. And that was the MILD part of the evening.
Like I said, the mall was FAR worse.
He was running around, trying to get (way) too far ahead of us, walking BACKWARDS or spinning as we walked in the semi-crowded areas of the mall.
As we were ending our night in Sears, where we had initially parked, anyways, it was BAD. Constantly handling things, running in to and hiding in racks, running off and "escaping" down in to other areas of the general area that I was at.
It got so bad in Sears, that at one point, I grabbed him by his shirt collar and held on for dear life. Of course then I was "choking" him and he was almost yelling for me to let go. I am SOOO thankful that barely a customer was in that area.
He also tried to go out the "merchandise pick up" door just off from the girls/baby section. And of course, I stayed there with him and the older one, who was still shopping as Dad took the younger one to use the toilet.
I honest cannot say what got in to him to be so freaking high strung. But good Lord, I was sure that someone was gonna call CPS on me for "man handling" my kid as a means to corral him.
Oh! And he almost knocked over a couple of displays or hit people as he walked backwards AND spinning. Both in Sears and in the mall area its self.
It was just a washout of an evening. All thanks to one kid and his actions. What was meant to be a NICE family outing, turned in to a chaotic nightmare for all (as in the two sisters and myself and Dad).
*Vent over*
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Showing posts with label disabled. Show all posts
Showing posts with label disabled. Show all posts
Friday, December 30, 2011
Monday, December 26, 2011
Enabling vs Disabling
Thanks is going out to a fellow Special Needs mom, Amy, over on FaceBook, who I have become friends with, and her "push" for me to post the following.
We met in a WONDERFUL group for parents like ourselves who are parents to kids that are disabled. And it's a locally-based group for our region, but we accept people from outside the Virginia state lines, as well.
The group is called Parents For Progress, or P4P for short. Our kids have ALL different types of disabilities and mental capacity. We sometimes DO disagree, but never get cut-throat.
So without further ado...
Just two summers ago, I learned how to swim/float for the first time. I was 33 years old (now 35)! If I had what I needed to have done BY the time I almost turned 6 or 7 years old, then I would have learned to swim much earlier, among other things.
Sometimes, even all of these years later, I can find myself angry at my mom for disabling me even more and literally taking away my childhood. And I refuse to let my son to think/feel about me, let alone his sisters for doing the same to them.
I love my mom, and always will. But ever since I can remember, I vowed and have kept my word to it, to NEVER be like her, where parenting is concerned. Even after she had died. And to this day, I will have a moment of anger and resentment pop in to my head. Especially around the anniversary of my "official removal" of my trache tube (December 1, 1989... not even two months after my mom died).
Heck, the way I have been told in the past, I was THE reason why my parents never had anymore children after me. She was scared another baby "would turn out to have the same problems"... Um, MY problems were *somewhat* because of her (having a 50 LB tumor sitting next to me in-utero).
I was extremely tiny and lightweight at birth. I was born almost a month early with extreme fluid on my lung (which collapsed from the pressure and weight of the fluid) and a esophageal fistula (a break in my esophagus tract to determine between the airway and the stomach routes). I died on the operating table like 2 to 4 times in the 18-hour repair surgery (after a touchy care-flight ride to another hospital when I was LESS than 24 hours old), which forever changed the appearance of my shoulder blade area on the right side (and left me asymmetrical in the breast area).
From the day of my birth, she basically (at first, I understood being that I was so tiny and helpless, and gravely ill with having NO hope for a chance at life, really) became a "helicopter mom". Later in my elementary school years, she was STILL so overly protective, that not only did she volunteer, but also was a yard duty person at lunchtime, a lunchroom supervisor, but decided to also become an "assistant" for MY classroom or one near me as to "keep an eye on Missy"... In other words, I had NO break from her. She watched me like a hawk. 24/7. If I did go to a friend's house, most times, she would constantly check on me in one way or another.
Now, maybe some people, especially fellow parents, like myself, of disabled children, can see it from our kid's perspective as well when it comes to being either too lenient, too harsh or too overprotective (or even NOT protective enough).
I know all too well the fine line EACH AND EVERY ONE OF US walks on a daily basis with our kids. It's such a difficult balancing act. But they also thrive on being treated as "just another normal kid". Even when getting in to trouble.
We met in a WONDERFUL group for parents like ourselves who are parents to kids that are disabled. And it's a locally-based group for our region, but we accept people from outside the Virginia state lines, as well.
The group is called Parents For Progress, or P4P for short. Our kids have ALL different types of disabilities and mental capacity. We sometimes DO disagree, but never get cut-throat.
So without further ado...
Just two summers ago, I learned how to swim/float for the first time. I was 33 years old (now 35)! If I had what I needed to have done BY the time I almost turned 6 or 7 years old, then I would have learned to swim much earlier, among other things.
Sometimes, even all of these years later, I can find myself angry at my mom for disabling me even more and literally taking away my childhood. And I refuse to let my son to think/feel about me, let alone his sisters for doing the same to them.
I love my mom, and always will. But ever since I can remember, I vowed and have kept my word to it, to NEVER be like her, where parenting is concerned. Even after she had died. And to this day, I will have a moment of anger and resentment pop in to my head. Especially around the anniversary of my "official removal" of my trache tube (December 1, 1989... not even two months after my mom died).
Heck, the way I have been told in the past, I was THE reason why my parents never had anymore children after me. She was scared another baby "would turn out to have the same problems"... Um, MY problems were *somewhat* because of her (having a 50 LB tumor sitting next to me in-utero).
I was extremely tiny and lightweight at birth. I was born almost a month early with extreme fluid on my lung (which collapsed from the pressure and weight of the fluid) and a esophageal fistula (a break in my esophagus tract to determine between the airway and the stomach routes). I died on the operating table like 2 to 4 times in the 18-hour repair surgery (after a touchy care-flight ride to another hospital when I was LESS than 24 hours old), which forever changed the appearance of my shoulder blade area on the right side (and left me asymmetrical in the breast area).
From the day of my birth, she basically (at first, I understood being that I was so tiny and helpless, and gravely ill with having NO hope for a chance at life, really) became a "helicopter mom". Later in my elementary school years, she was STILL so overly protective, that not only did she volunteer, but also was a yard duty person at lunchtime, a lunchroom supervisor, but decided to also become an "assistant" for MY classroom or one near me as to "keep an eye on Missy"... In other words, I had NO break from her. She watched me like a hawk. 24/7. If I did go to a friend's house, most times, she would constantly check on me in one way or another.
Now, maybe some people, especially fellow parents, like myself, of disabled children, can see it from our kid's perspective as well when it comes to being either too lenient, too harsh or too overprotective (or even NOT protective enough).
I know all too well the fine line EACH AND EVERY ONE OF US walks on a daily basis with our kids. It's such a difficult balancing act. But they also thrive on being treated as "just another normal kid". Even when getting in to trouble.
Tuesday, December 20, 2011
NT Parents vs. SN Parents
I am a mother.
I am a mother to three children.
I am a mother to three kids, where one of them has "problems".
I am a mother to three kids, where one of them has "problems", but that I love all equally.
You say that there is NO way you could do what I do, put up with what I put up with, and defend what I have to defend.
You say we are a strong, but rare breed. But there are more parents like me than you most likely even know. Because we don't look to be recognized or placed on a pedestal.
We do what we have to do, when we have to do it, as to ensure that our "special" kids are getting everything in life that they deserve.
That includes being as close to "normal" as we can get them. And to obtain the specialized services, that though are supposed to be rendered by Federally mandated Laws, are not always put in to place.
We rejoice at what most people take for granted. Especially when they are "late bloomers". We cry from the frustration. Not just our own, but the frustrations that our children display.
We want what ALL (okay, MOST) parents want for their kids. A better and fulfilling life.
You and I aren't THAT different in the world of Parenting. We, like our children, just do things a little bit different from the rest of you. And we see things (like first words, first steps and the other norms of growing up) a tad bit differently as well.
Other than that, I'm not much different from you. And yes, you CAN do what I do on a daily basis. Because when push comes to shove, when it comes to your child, you would do most ANYTHING and move every mountain and boulder to help your child achieve their very best potential.
Do I want to just throw my hands up and quit? YES! Sometimes, the fight to help your child achieve can really tire you emotionally and mentally. As can their daily struggles and fights of will. But in the end, no matter how much you want to just turn around and walk away, you CAN'T. You know for a fact that you have invested WAY too much time, energy, and most important, love in to helping your children succeed to the best of their ability.
So, the next time you think to yourself that you could "never do my job as a parent", or think I must be a lot stronger than you, take a step back and think, and know that when it all comes down to that fine line in the sand, there is really no line at all.
I am a mother to three children.
I am a mother to three kids, where one of them has "problems".
I am a mother to three kids, where one of them has "problems", but that I love all equally.
You say that there is NO way you could do what I do, put up with what I put up with, and defend what I have to defend.
You say we are a strong, but rare breed. But there are more parents like me than you most likely even know. Because we don't look to be recognized or placed on a pedestal.
We do what we have to do, when we have to do it, as to ensure that our "special" kids are getting everything in life that they deserve.
That includes being as close to "normal" as we can get them. And to obtain the specialized services, that though are supposed to be rendered by Federally mandated Laws, are not always put in to place.
We rejoice at what most people take for granted. Especially when they are "late bloomers". We cry from the frustration. Not just our own, but the frustrations that our children display.
We want what ALL (okay, MOST) parents want for their kids. A better and fulfilling life.
You and I aren't THAT different in the world of Parenting. We, like our children, just do things a little bit different from the rest of you. And we see things (like first words, first steps and the other norms of growing up) a tad bit differently as well.
Other than that, I'm not much different from you. And yes, you CAN do what I do on a daily basis. Because when push comes to shove, when it comes to your child, you would do most ANYTHING and move every mountain and boulder to help your child achieve their very best potential.
Do I want to just throw my hands up and quit? YES! Sometimes, the fight to help your child achieve can really tire you emotionally and mentally. As can their daily struggles and fights of will. But in the end, no matter how much you want to just turn around and walk away, you CAN'T. You know for a fact that you have invested WAY too much time, energy, and most important, love in to helping your children succeed to the best of their ability.
So, the next time you think to yourself that you could "never do my job as a parent", or think I must be a lot stronger than you, take a step back and think, and know that when it all comes down to that fine line in the sand, there is really no line at all.
Thursday, December 1, 2011
SEVERELY Mentally Handicapped Kids *Tourtured* By Own Mother
I'll just let you watch the video and let it speak for its self... Because I honestly have NO words.
Posted on YouTube on Nov. 11th, 2011 from a local news channel in St. Petersberg.
GRAPHIC DETAILS!
Posted on YouTube on Nov. 11th, 2011 from a local news channel in St. Petersberg.
GRAPHIC DETAILS!
Friday, August 12, 2011
Schoolward Bound. Fifth Grade, Here He Comes!!
This past week we are about to leave, and the one that is coming upon us has been and will be fairly busy. It's back to school time. And I think that ALL of us are ready. For the most part, anyways.
This week was filled with filling out paperwork, taking in paperwork to be filled out by Medical Professionals, a doctor appointment and school supply shopping.
Geez! Just thinking of what I just listed, I'm tired all over again! *hehe* (=
This coming week, it's REGISTRATION time! And this means now, TWO different schools for three different kids. My oldest is moving on to Middle School.
B is in fifth grade this year. And thankfully, I was able to place him in with my oldest's former homeroom teacher, who is the ONLY one of the three in their grade to be Special Education certified.
It also helps that she taught my HUSBAND when he was a kid at another school, for the third grade. And she started LAST school year to acclimate him by saying good morning to him, giving him his "morning hug" (their classrooms were next to one another at the time between the two grades). And she already has gotten an idea of what his needs will be with classroom placement and what will possibly work best to get the best ability out of his potential.
She runs a pretty tight ship. You do as expected, she is your BFF. You decide to make her life hell and not do as instructed, then your ass is grass. And he needs that kind of firm structure. And she is already on to his manipulations. BONUS!
Do I worry? Yep! But not as much as I have with the teachers of the past in regards to B. This lady is one of the best in her field. And one of the most patient and kind. But also one of the most strict and not able to be bamboozled, too.
I'll more so worry NEXT year, then I will THIS year. Because there is a VERY good chance that B and his older sister will NOT be in the same Middle School, being she was accepted in to a school across town that takes those that are highly advanced/gifted. If she is able to remain there next school year (2012-2013), then he will be in our Zone School for Middle School all on his own.
Yes, he too is advanced in most areas of study. But he doesn't have the work ethic and focus for a Gifted Program. Thanks to his emotional instability, lack of maturity, and his severe ADHD it takes him out of the running for advancement such as what his sister is in. And it hurts me. But at the same time, I can safely say that a setting such as that is clearly not for him.
Should I compare? No. But it is extremely hard to NOT see the difference versus the similarities.
You sometimes, I feel, HAVE TO compare the "odd one out" to the others because it forces you to see just how different the one with the problems truly is from most of society. It makes you step back and think a little more and be more compassionate, understanding and willing to have more patience. Not just with YOUR child with Silent Disabilities, but other children (and adults) with the same afflictions as well.
So, here is to (hopefully) smooth sailing for this school year. In just over a week, and then all three are off on another school-year adventure of learning and fun. But this year, it will be minus their big sister. And I think they will do just fine.
This week was filled with filling out paperwork, taking in paperwork to be filled out by Medical Professionals, a doctor appointment and school supply shopping.
Geez! Just thinking of what I just listed, I'm tired all over again! *hehe* (=
This coming week, it's REGISTRATION time! And this means now, TWO different schools for three different kids. My oldest is moving on to Middle School.
B is in fifth grade this year. And thankfully, I was able to place him in with my oldest's former homeroom teacher, who is the ONLY one of the three in their grade to be Special Education certified.
It also helps that she taught my HUSBAND when he was a kid at another school, for the third grade. And she started LAST school year to acclimate him by saying good morning to him, giving him his "morning hug" (their classrooms were next to one another at the time between the two grades). And she already has gotten an idea of what his needs will be with classroom placement and what will possibly work best to get the best ability out of his potential.
She runs a pretty tight ship. You do as expected, she is your BFF. You decide to make her life hell and not do as instructed, then your ass is grass. And he needs that kind of firm structure. And she is already on to his manipulations. BONUS!
Do I worry? Yep! But not as much as I have with the teachers of the past in regards to B. This lady is one of the best in her field. And one of the most patient and kind. But also one of the most strict and not able to be bamboozled, too.
I'll more so worry NEXT year, then I will THIS year. Because there is a VERY good chance that B and his older sister will NOT be in the same Middle School, being she was accepted in to a school across town that takes those that are highly advanced/gifted. If she is able to remain there next school year (2012-2013), then he will be in our Zone School for Middle School all on his own.
Yes, he too is advanced in most areas of study. But he doesn't have the work ethic and focus for a Gifted Program. Thanks to his emotional instability, lack of maturity, and his severe ADHD it takes him out of the running for advancement such as what his sister is in. And it hurts me. But at the same time, I can safely say that a setting such as that is clearly not for him.
Should I compare? No. But it is extremely hard to NOT see the difference versus the similarities.
You sometimes, I feel, HAVE TO compare the "odd one out" to the others because it forces you to see just how different the one with the problems truly is from most of society. It makes you step back and think a little more and be more compassionate, understanding and willing to have more patience. Not just with YOUR child with Silent Disabilities, but other children (and adults) with the same afflictions as well.
So, here is to (hopefully) smooth sailing for this school year. In just over a week, and then all three are off on another school-year adventure of learning and fun. But this year, it will be minus their big sister. And I think they will do just fine.
Tuesday, May 31, 2011
Views Of the Disabled Around the World
The following videos are ones I was able to "find" in regards to how those around the world view and are treated that have various disabilities. And personally, the last video is the most profound.
Kenya...
India...
Botswana...
Philippines...
Liberia...
Kenya...
India...
Botswana...
Philippines...
Liberia...
Sunday, May 29, 2011
Inclusion...As it should be.
My child has mental health issues. They do NOT have him, though. He may have his quirks and his ways of viewing the world around him. But when you get down to the brass tacks of it all, he is just your average, ordinary, everyday kid who loves, loves to be loved, plays hard and loves to play with others (most of the time).
Also, we got his SOL (Standards of Learning) scores back from taking them for Reading and Math. He placed Advanced in both. One of them (Reading) was a 2 hour to 2 1/2 hour test. He was able to go to another area to take his test and have as much time as he needed. He felt less stressed and anxiety-ridden, and felt more at ease at knowing that he could just take HIS time and not feel any pressure.
We are now officially out of school for the Summer. But we are getting B in to the Day Treatment Camp. And I already have his new Homeroom teacher lined up for next year. She is the ONLY one of the three in the 5th Grade Unit Special Ed. certified and is already acclimating him to be with her. In fact she started it MONTHS ago, seeing as they are only three doors down from one another. I love H's (now former) teacher!
(My niece who is going to be a Senior in HS and B at the family reunion)
(Five...yes, F-I-V-E generations of my husband's late Grandfather's side of the family. 7 kids, 16 grands and 32 great-grands, and 1 great-great grand. NOT all pictured here, but includes spouses/significant others, with my son in very front in red shirt and blue shorts.)
(B in the school's Field Day race this past Thursday.)
Also, we got his SOL (Standards of Learning) scores back from taking them for Reading and Math. He placed Advanced in both. One of them (Reading) was a 2 hour to 2 1/2 hour test. He was able to go to another area to take his test and have as much time as he needed. He felt less stressed and anxiety-ridden, and felt more at ease at knowing that he could just take HIS time and not feel any pressure.
We are now officially out of school for the Summer. But we are getting B in to the Day Treatment Camp. And I already have his new Homeroom teacher lined up for next year. She is the ONLY one of the three in the 5th Grade Unit Special Ed. certified and is already acclimating him to be with her. In fact she started it MONTHS ago, seeing as they are only three doors down from one another. I love H's (now former) teacher!
Monday, May 23, 2011
And so he got approved...Sorta.
Finally. I had received the "Pre-Authorization" notice for Bryce to go to Day Treatment Day Camp for the summer. I had practically crawled up his Case Manager's hind end as to know when I was to get the paper work. After several weeks asking about this paperwork to fill out, she FINALLY tells me that Medicaid is "doing things different this year and pre-authing" the clients". Nice! Thanks for telling me after WEEKS of speculation.
So, I get my copy in the mail last week. He got approved alright! For "Mental Health Partial Hospitalization" due to it being "Medically Necessary And Approved as Requested".
Stupid insurance formalities! I am NOT placing my kid in a Psych Ward. He is going to be in a Summer Camp with other kids with problems and disabilities as he too has.
In the Day Treatment Day Camp setting, they not only do fun things like crafts and go to various places. They learn the tools (or are re-taught, if they have "forgotten") to help them have better social and behavioral skills. And they even receive therapy on-site at least once a week. And they learn how to better form and interact in friendships.
Most of these kids don't have any real friends. Why? Because of their "quirks", like being so short tempered, their ability to ramble on about one certain thing, not letting others speak or they get cut off because our kids have yet to master the social cues of when to "talk and when to shut up". Or they have visible tics that scare other kids from interacting with the one affected.
At least at the Day Treatment Day Camp, EVERYONE is equal. There is no shunning. They feel safe and comfortable. And if their "quirks" decide to shine, that's okay. Even the negative ones. But they will get assistance in trying to "deal" with the more negative aspects of the times where being good is just a little bit more hard than most days for them.
But one little hitch is still in the plan. Where in the world is my paperwork to OFFICIALLY place him in to the Summer Camp? I guess I will get to make the lovely call (again!) to ask his (new..as in new to being one) Case Manager once more about getting the papers to fill out and give permission to be in the Day Treatment setting.
It's only about two weeks away. So they best give me my papers to sign. Or else, if she cannot do her job properly, I will have to report her to Bryce's old CM, who is now in charge of the CM staffing.
And I REALLY hate "tattling" on people, only to get them in to trouble. But by golly! They need to do their job and do it in a TIMELY manner. Yes, there are other kids besides mine that they help and I duly understand this. But I appreciate equal time and concern for my kid as well, along with the other patients.
So, I get my copy in the mail last week. He got approved alright! For "Mental Health Partial Hospitalization" due to it being "Medically Necessary And Approved as Requested".
Stupid insurance formalities! I am NOT placing my kid in a Psych Ward. He is going to be in a Summer Camp with other kids with problems and disabilities as he too has.
In the Day Treatment Day Camp setting, they not only do fun things like crafts and go to various places. They learn the tools (or are re-taught, if they have "forgotten") to help them have better social and behavioral skills. And they even receive therapy on-site at least once a week. And they learn how to better form and interact in friendships.
Most of these kids don't have any real friends. Why? Because of their "quirks", like being so short tempered, their ability to ramble on about one certain thing, not letting others speak or they get cut off because our kids have yet to master the social cues of when to "talk and when to shut up". Or they have visible tics that scare other kids from interacting with the one affected.
At least at the Day Treatment Day Camp, EVERYONE is equal. There is no shunning. They feel safe and comfortable. And if their "quirks" decide to shine, that's okay. Even the negative ones. But they will get assistance in trying to "deal" with the more negative aspects of the times where being good is just a little bit more hard than most days for them.
But one little hitch is still in the plan. Where in the world is my paperwork to OFFICIALLY place him in to the Summer Camp? I guess I will get to make the lovely call (again!) to ask his (new..as in new to being one) Case Manager once more about getting the papers to fill out and give permission to be in the Day Treatment setting.
It's only about two weeks away. So they best give me my papers to sign. Or else, if she cannot do her job properly, I will have to report her to Bryce's old CM, who is now in charge of the CM staffing.
And I REALLY hate "tattling" on people, only to get them in to trouble. But by golly! They need to do their job and do it in a TIMELY manner. Yes, there are other kids besides mine that they help and I duly understand this. But I appreciate equal time and concern for my kid as well, along with the other patients.
Wednesday, May 18, 2011
Living Life To It's Fullest...No Matter The Disability.
The year was 1976. It was Christmas time. And it was three weeks prior to my due date. My parents didn't know until my mom was about seven months along that I was even coming in to their lives (she was obese and thought she was gaining more, though she was eating less). At the same time, she also had a tumor that sit next to me in the womb area, making barely any room for me to grow and made it difficult to move (or even breath out the fluids I swallowed).
I came in to the world literally backwards, butt first. As I did, I tore her to the point of her nearly dying from the severe blood loss.
Then it was shown that from my chest wall, I had a collapsed lung and after further inspection, that I had a Tracheal Fistula (my esophagus was basically severed, almost completely).
After stabilization, airlift transport and an eighteen hour surgery, where I "died" four times, I had my lung re-inflated and had the fluid removed. But I was also trached and they had to do the repair along with everything else to my esophagus.
First, it was that I most likely wouldn't live past 24 to 48 hours. Then, the first week. Then the first month. Then six months.
All the while, per the doctors, I would *NEVER* walk independently, talk, feed/drink independently (as in require tube feedings) or have viable pregnancies.
Plus once my parents even fathomed bringing their almost-three-year-old daughter home FOR GOOD in 1980, they were once again met with resistance. They were firmly told that there was NO way that they could sustain me on their own and it was best to place me in an institution to get the level of care THE DOCTORS felt I needed.
Well, I went home with my parents, against Doctor's advice. My in-home nurse was FIRED after the first three weeks of not allowing my own mother to care for HER child in any way. And both my mom and my dad had started me on a path of learning and doing. Walking, talking and eating.
Today, I eat anything I want. And drink anything I want. Of course, thanks to my esophageal tract still being way too narrow and having a "dent", I have at times, trouble swallowing my food without it going the wrong way. Rice and carbonated sodas being the main culprit.
I walk ALL over. Have ran 7-mile races, and plan to run the four-miler (and walk, too!) in September with one of my kids.
And I have three great kids. Each unique in their own way. One like their mom. One like their dad. And one with a mix of the two of us.
Please, I urge you strongly to watch the following video. Yes, this man has had a MUCH harder life than I could ever have had, medically speaking.
Thanks to the UNCONDITIONAL love of his father, his dedication to his son, and the fact that this man NEVER ONCE let the obstacle of severe disabilities his son has hinder the now-grown man from enjoying life to its fullest capacity despite being so severely disabled that he requires a Speak Box and a wheelchair.
Believe me, you will need to get out a handful of tissues, because you WILL cry from the awesomeness of witnessing the powerful pull of love.
Thanks to fellow member Rainey, from the FaceBook group, Abled & Disabled United for Community Change for initially posting the video on the group's wall.
I came in to the world literally backwards, butt first. As I did, I tore her to the point of her nearly dying from the severe blood loss.
Then it was shown that from my chest wall, I had a collapsed lung and after further inspection, that I had a Tracheal Fistula (my esophagus was basically severed, almost completely).
After stabilization, airlift transport and an eighteen hour surgery, where I "died" four times, I had my lung re-inflated and had the fluid removed. But I was also trached and they had to do the repair along with everything else to my esophagus.
First, it was that I most likely wouldn't live past 24 to 48 hours. Then, the first week. Then the first month. Then six months.
All the while, per the doctors, I would *NEVER* walk independently, talk, feed/drink independently (as in require tube feedings) or have viable pregnancies.
Plus once my parents even fathomed bringing their almost-three-year-old daughter home FOR GOOD in 1980, they were once again met with resistance. They were firmly told that there was NO way that they could sustain me on their own and it was best to place me in an institution to get the level of care THE DOCTORS felt I needed.
Well, I went home with my parents, against Doctor's advice. My in-home nurse was FIRED after the first three weeks of not allowing my own mother to care for HER child in any way. And both my mom and my dad had started me on a path of learning and doing. Walking, talking and eating.
Today, I eat anything I want. And drink anything I want. Of course, thanks to my esophageal tract still being way too narrow and having a "dent", I have at times, trouble swallowing my food without it going the wrong way. Rice and carbonated sodas being the main culprit.
I walk ALL over. Have ran 7-mile races, and plan to run the four-miler (and walk, too!) in September with one of my kids.
And I have three great kids. Each unique in their own way. One like their mom. One like their dad. And one with a mix of the two of us.
Please, I urge you strongly to watch the following video. Yes, this man has had a MUCH harder life than I could ever have had, medically speaking.
Thanks to the UNCONDITIONAL love of his father, his dedication to his son, and the fact that this man NEVER ONCE let the obstacle of severe disabilities his son has hinder the now-grown man from enjoying life to its fullest capacity despite being so severely disabled that he requires a Speak Box and a wheelchair.
Believe me, you will need to get out a handful of tissues, because you WILL cry from the awesomeness of witnessing the powerful pull of love.
Thanks to fellow member Rainey, from the FaceBook group, Abled & Disabled United for Community Change for initially posting the video on the group's wall.
Tuesday, May 3, 2011
Verbal Abuse/Assault. I'm tired of it.
Verbal assaults. Gotta love 'em. Yeah, I just LOVE getting yelled at by a ten year old. And over what are seemingly mundane things.
Like getting up for school and being told that I will NOT "cater" to his every whim as if he is a two year old.
This merry-go-round is getting to be an insanely OLD ride. I want to get the hell off the damn thing.
Why me? Why am I to be the "lucky" one to be bombarded in this manner? I'm just completely TIRED of this shit.
All I hear from Bryce is that he is a "tween" and is ten years old. And that he is a "big boy" now.
But each time he acts the way he did this morning, I remind him that he is NOT acting his age and that for being a "tween", he being more like a "toddler".
I came THIS close to back handing him in the face for being so verbally abusive to me. Telling me to shut up and to not tell him what to do. And for yelling at me for MAKING HIM get up for school.
Now, for the next 4 to 8 weeks, he will be WITHOUT his Nintendo DS, computer time and be in bed by nine o'clock EVERY night (including the weekend). If he keeps pushing me, it's going to be moved back to 8:30 or even eight PM.
I'm at a point where if this crap doesn't change, and soon, I'll seek out a detention home or a group facility for the behaviorally challenged (which there IS one or two in our area for kids with these types of special needs).
I deserve better than this. So do the girls. We should NOT be subjected (almost daily) to verbal assaults and threats. Nor should we be getting physically harmed due to my son's lack of control.
Like getting up for school and being told that I will NOT "cater" to his every whim as if he is a two year old.
This merry-go-round is getting to be an insanely OLD ride. I want to get the hell off the damn thing.
Why me? Why am I to be the "lucky" one to be bombarded in this manner? I'm just completely TIRED of this shit.
All I hear from Bryce is that he is a "tween" and is ten years old. And that he is a "big boy" now.
But each time he acts the way he did this morning, I remind him that he is NOT acting his age and that for being a "tween", he being more like a "toddler".
I came THIS close to back handing him in the face for being so verbally abusive to me. Telling me to shut up and to not tell him what to do. And for yelling at me for MAKING HIM get up for school.
Now, for the next 4 to 8 weeks, he will be WITHOUT his Nintendo DS, computer time and be in bed by nine o'clock EVERY night (including the weekend). If he keeps pushing me, it's going to be moved back to 8:30 or even eight PM.
I'm at a point where if this crap doesn't change, and soon, I'll seek out a detention home or a group facility for the behaviorally challenged (which there IS one or two in our area for kids with these types of special needs).
I deserve better than this. So do the girls. We should NOT be subjected (almost daily) to verbal assaults and threats. Nor should we be getting physically harmed due to my son's lack of control.
Saturday, April 30, 2011
ADA and it's historical Significance
ADA, also commonly known as Americans with Disabilities Act, which is now integrating more and more Disabilities over the last couple of decades is an often misunderstood Federal Law. There seem to be more assumptions made, than having facts spoken of.
To get a better view about the ADA, please watch this video that is just a few minutes long.
Sadly, for those individulas who like my son, have what are called "invisible" or "silent" disabilities, getting the ADA to work for them is a chore, to say the least.
The less a person LOOKS disabled, the less likely that the ADA will benefit them. At least this is MY personal experience in regards to trying to have the ADA work in Bryce's favor. I'm still fighting to get simple accommodations at school. Not to mention, he is LEGALLY obliged to receive the 504 Plan. But again, the school is fighting me on that with mundane excuses.
Here's some facts about Invisible/Silent Disabilities.
We as individuals with invisible/silent disabilities and/or those as their caregivers need to get louder than we have been. We need to start shouting from the rooftops. Especially where CHILDREN are concerned. They are the most overlooked individuals.
Why? The simple answer is that because they are KIDS. Kids are stereotyped as being too young and should be able to have things "bounce off them" as if they were rubber balls. Basically, they are too young to be so inactive. Or too young to have "such things" (such as diabetes, which in its self can be QUITE debilitating).
Some children (and adults) don't "look" sick on the outside, but are debilitated on the inside. They may keep medical equipment within their vehicles, out of plan sight (which was the case with me as a small child), in case of an emergent situation.
For twenty years, the Americans with Disabilities Act (ADA) has fought long and hard for those that are VISUALLY (as in seen as they are physically disabled) disabled. Just within the past decade, that I MYSELF know of, have the silently disabled been justified with being included in the fight for Federal Law to also encompass their needs of inclusion and legal fairness to be seen and heard as having REAL disabilities and to be afforded the same rights and Due Processes as their visibly impaired counterparts.
I hope that this post has served it's purpose as being a learning tool, a historical piece, and a means to get more people involved in the movement to bring to light that those with silent/invisible disabilities can and ARE productive individuals within their communities and that they should be able to obtain the same rights and inclusions as those that are blind, deaf, physically and/or mentally challenged.
To get a better view about the ADA, please watch this video that is just a few minutes long.
Sadly, for those individulas who like my son, have what are called "invisible" or "silent" disabilities, getting the ADA to work for them is a chore, to say the least.
The less a person LOOKS disabled, the less likely that the ADA will benefit them. At least this is MY personal experience in regards to trying to have the ADA work in Bryce's favor. I'm still fighting to get simple accommodations at school. Not to mention, he is LEGALLY obliged to receive the 504 Plan. But again, the school is fighting me on that with mundane excuses.
Here's some facts about Invisible/Silent Disabilities.
We as individuals with invisible/silent disabilities and/or those as their caregivers need to get louder than we have been. We need to start shouting from the rooftops. Especially where CHILDREN are concerned. They are the most overlooked individuals.
Why? The simple answer is that because they are KIDS. Kids are stereotyped as being too young and should be able to have things "bounce off them" as if they were rubber balls. Basically, they are too young to be so inactive. Or too young to have "such things" (such as diabetes, which in its self can be QUITE debilitating).
Some children (and adults) don't "look" sick on the outside, but are debilitated on the inside. They may keep medical equipment within their vehicles, out of plan sight (which was the case with me as a small child), in case of an emergent situation.
For twenty years, the Americans with Disabilities Act (ADA) has fought long and hard for those that are VISUALLY (as in seen as they are physically disabled) disabled. Just within the past decade, that I MYSELF know of, have the silently disabled been justified with being included in the fight for Federal Law to also encompass their needs of inclusion and legal fairness to be seen and heard as having REAL disabilities and to be afforded the same rights and Due Processes as their visibly impaired counterparts.
I hope that this post has served it's purpose as being a learning tool, a historical piece, and a means to get more people involved in the movement to bring to light that those with silent/invisible disabilities can and ARE productive individuals within their communities and that they should be able to obtain the same rights and inclusions as those that are blind, deaf, physically and/or mentally challenged.
Monday, April 25, 2011
SSI/SSDI...What Are They?
My son gets SSI for children. He basically draws off of myself and/or my husband's collected Social Security benefits that I did at one time pay in to, and that my husband, through his employer, IS CURRENTLY paying in to.
Most people have a misconceived notion that my child draws off of ALL tax payers. Not true. It's off of myself and/or my husband, only.
Please watch the two following videos, especially the second one in regards to information pertaining to SSI/SSDI and what Mental Disorders/Illnesses MAY qualify to collect, and it's application processes.
*DISCLAIMER*... I do not endorse either of these gentlemen. I have not ever made contact with either, nor am I receiving any monetary gain for featuring these men and their companies.
Most people have a misconceived notion that my child draws off of ALL tax payers. Not true. It's off of myself and/or my husband, only.
Please watch the two following videos, especially the second one in regards to information pertaining to SSI/SSDI and what Mental Disorders/Illnesses MAY qualify to collect, and it's application processes.
*DISCLAIMER*... I do not endorse either of these gentlemen. I have not ever made contact with either, nor am I receiving any monetary gain for featuring these men and their companies.
Tuesday, April 19, 2011
Doing Things Different This Time.
I'd gotten a call out of the blue from Bryce's Case Manager over at Child And Family Services (where he gets his therapies as needed, and sees his Psychiatrist).
Before leaving from his appointment earlier in the month, I once more mentioned to be sure to let me know about Day Treatment Day Camp. I skipped last year as to give Bryce a "break". This year, that mistake will NOT happen again.
Plus, Bryce enjoys going! Hr goes to different places. And it's all-expense paid by the funds received by Day Treatment.
Medicaid picks up the tab for my child to go. Federal Grants and community donations help fund the various activities.
Not only does my son get to do fun things Monday through Friday, but he receives the help of a trained staff in behavioral issues, and talks with a registered Psychiatrist or Psychologist once a week.
But apparently (according to the Case Manager), things are going to be a tad bit different. In a GOOD way!
Those that pick which students are in need of Day Treatment services during the school year will be there to watch the kids that are NOT being served within the school setting (including MY kid) and observing them to see if indeed they can qualify for help and to get the ball rolling.
Two years now, two teachers agreed that Bryce needed extra help in the classroom. Behavior management, primarily. He's been disruptive of others, non-compliant at times, not staying on task or being well organized. And I can only do so much from home. And the teacher herself can only do so much individually with him, seeing as there is a minimum of 18 kids in her class that ALL demand attention at some point.
Even if he can get assistance via the Day Treatment Therapist for an hour a day, or every couple of days, I think, and truly believe that it would make a tremendous amount of difference.
And my hope is that when all is said and done with the summer's Day Treatment Camp and the observances made, that Bryce will be one of the ones that will be selected for the extra help.
Though, I must admit, it's a bit hard at times to stay positive or optimistic about things such as this. After being shot down, ran over, screwed over and flat-out denied so many times, it can sometimes be difficult to stay in that positive frame of mind. Especially since I have yet to be able to fill out the papers to place Bryce in DTC.
Before leaving from his appointment earlier in the month, I once more mentioned to be sure to let me know about Day Treatment Day Camp. I skipped last year as to give Bryce a "break". This year, that mistake will NOT happen again.
Plus, Bryce enjoys going! Hr goes to different places. And it's all-expense paid by the funds received by Day Treatment.
Medicaid picks up the tab for my child to go. Federal Grants and community donations help fund the various activities.
Not only does my son get to do fun things Monday through Friday, but he receives the help of a trained staff in behavioral issues, and talks with a registered Psychiatrist or Psychologist once a week.
But apparently (according to the Case Manager), things are going to be a tad bit different. In a GOOD way!
Those that pick which students are in need of Day Treatment services during the school year will be there to watch the kids that are NOT being served within the school setting (including MY kid) and observing them to see if indeed they can qualify for help and to get the ball rolling.
Two years now, two teachers agreed that Bryce needed extra help in the classroom. Behavior management, primarily. He's been disruptive of others, non-compliant at times, not staying on task or being well organized. And I can only do so much from home. And the teacher herself can only do so much individually with him, seeing as there is a minimum of 18 kids in her class that ALL demand attention at some point.
Even if he can get assistance via the Day Treatment Therapist for an hour a day, or every couple of days, I think, and truly believe that it would make a tremendous amount of difference.
And my hope is that when all is said and done with the summer's Day Treatment Camp and the observances made, that Bryce will be one of the ones that will be selected for the extra help.
Though, I must admit, it's a bit hard at times to stay positive or optimistic about things such as this. After being shot down, ran over, screwed over and flat-out denied so many times, it can sometimes be difficult to stay in that positive frame of mind. Especially since I have yet to be able to fill out the papers to place Bryce in DTC.
Saturday, April 9, 2011
Blog Hop With the Weekend Wander Crew!
Happy Weekend to all! I hope your Saturday is quiet, stress free and full of fun.
It's that time again for Weekend Wander with the fab blogging community, For The Love Of Blogs.
Come and join in the fun! But first, be my guinea pig if you will and see if your link will post on my Inlinkz blog hop area. Just follow the directions (including about leaving a GENUINE comment on THIS post..As in NO copy/paste or a "I followed, now follow me" thing.
Have a great weekend everyone!
It's that time again for Weekend Wander with the fab blogging community, For The Love Of Blogs.
Come and join in the fun! But first, be my guinea pig if you will and see if your link will post on my Inlinkz blog hop area. Just follow the directions (including about leaving a GENUINE comment on THIS post..As in NO copy/paste or a "I followed, now follow me" thing.
Have a great weekend everyone!
Wednesday, April 6, 2011
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